Monday, October 29, 2012

On October 24, after 1 month and 10 days of ABA Therapy, James said his twin sister's name for the first time. I don't know how to describe it but it was on the level of hearing him call me "Mommy" and call Chris "Daddy". This is how my sister worded it on our Facebook page:

"HUGE NEWS: James said Lily for the first time tonight. Lily who has been by James' side since before he was even born. James called his twin sister by name. All this made possible because of ABA therapy!"

Lily is Twin A and James is Twin B

'Meeting' Each Other on Christmas Eve

I don't remember when it started but when we were teaching Lily how to say the names of different people we would ask, "Lily, can you say James?" and she would reply, "Brother." And every time we asked her to say James' name she would say "Brother" instead.

When he does get up before her and I go in to get her, her first question is always, "Where Brudder doe?" (and usually followed by "Where's daddy?").

I don't think Lily realized it when he said it; James was heading back to therapy and we were telling him to say "Bye" to everybody and he said "Bye Lily". It wasn't echolalic (meaning just repeating was he was hearing without understanding it). It was a string of TWO WORDS and he KNEW who he was talking to.

Saturday, October 6, 2012

James has beautiful green eyes.
Eyes that we haven't seen much of because of
his poor eye contact due to his autism.

On August 14, 2012, James Heuer, an almost 3 year-old little boy, was diagnosed with Classic Autism. His family also learned that James has Cognitive Communication Disorder and Developmental Dyspraxia. James’ family was finally able to know why James never answered to his name or interacted with his twin sister (signs of autism). They were able to know why James never seemed to understand what was said to him and why he always got so upset when he tried to communicate with others (Cognitive Communication Disorder). They now know why James had such bad lack of coordination and couldn't seem to hold his own weight (Developmental Dyspraxia).

The recommended treatment for James is 35-40 hours a week of Applied Behavioral Analysis Therapy (ABA Therapy). In ABA Therapy James is presented with a task and is asked to repeat that task until he is able to do it as well as someone his own age, such as turning around to answer when his name is called. When his therapists come to the house to work with him we tell his twin sister that his friends are there helping James ‘learn how to learn’ because he doesn’t know how. James has a close family member who was diagnosed with autism when they were James’ age. This family member participated in ABA for 40 hours a week for almost 3 years. That family member no longer carries the diagnosis of autism. While losing the diagnosis is the best possible outcome of ABA, any amount of therapy has been proven to improve the life of a child.

Though very expensive, ABA is widely recognized as a safe and effective treatment for autism. It has been endorsed by a number of different states and federal agencies, including the U.S. Surgeon General. An in-home ABA program providing the recommended 40 hours a week of therapy will cost around $50,000-$60,000 a year. Unfortunately, the state of Utah views autism as a behavioral diagnosis and not a medical one and therefore does not require insurance companies to help pay for autism treatments. This means that James’ family will have to pay for all of his treatment out of pocket.

On September 17, after 4 days of ABA therapy, James was brought to his mom during a session and called her 'Mommy' for the first time in his life. On October 1, after 18 days of ABA, James saw his dad and called him 'Daddy' for the first time. Those moments and future moments like that will be worth every cent earned, fundraised, begged for and then spent providing James with ABA Therapy.

“Sometimes people say that the puzzle represents autism because it is very complex and autism is a puzzle to all of us.” We don’t know what causes autism or why certain children have it and others don’t. Please help us slide James’ missing puzzle piece into its place by donating to give James the treatment he needs.

Donate to James' ABA Therapy Fund

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The Reader's Digest Bio of Our Family

The Heuer Family, April 2012

I'm Ginger and this is our family. Chris, age 29, me, age 29, and our twins Lily and James, age 4. I thought it was weird to have a blog titled "The Heuer Family" but not tell anyone who we are.

Chris and I met in 2003 in the BYU Marching Band, started dating in 2004 and got married in 2007. About 2 years later we got our puppy Gizmo and about a year after that we had our twins, Lily and James. Lily is a family name on Chris' side (plus I've always liked the name), and James is Chris' middle name (so their names have nothing to do with Harry Potter). We recently got a puppy named Tonka for Lily. She takes great care of him and he is her pride and joy.

Chris graduated from BYU in April 2013 with a degree in Computer Science. I stay home with the twins trying not to lose my mind running a therapy program.

We live in Chris' parents' basement in Utah- Utah being a state that doesn't require insurance companies to cover autism treatments, it leaves all of James' therapy to be paid for on our own. We don't know what's going to happen next week but we're trying our hardest to find resources to pay for it.

Right now, we're trucking along, working our hardest to give James what he needs and make sure Lily feels important (she takes her responsibilities as a puppy mommy very seriously). I can't say how often I'll update, blogs always seem so touchy-feely to me and I am so not like that. But I'll try.